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Wednesday, April 30, 2008

Well, I saw my internist on Monday as planned. The good news is my lungs are clear, so no bronchitis or pneumonia this time. Phew! I was pretty sure of that, but with all the phlegm I'm coughing up, I wasn't positive.

She said my right ear was fine, but my left ear looked "bright" but wasn't bad enough to qualify as infected on Monday. She said I was probably either getting an ear infection or getting over one in that ear. She was concerned about my sinuses, but wanted to wait until the end of the week to see if I was already getting over an infection there too.

I'm definitely slowly improving from how I felt last week, so I think I'm over the worst of it.

What was interesting was I went to acupuncture yesterday (Tuesday), and was so ultra sensitive that she could only get one needle in me that I could tolerate. We've noticed before that how I'm feeling affects whether I can tolerate certain of the needles, but this is the first time I couldn't tolerate almost any of them. Instead she did some Reiki and some pressure work in the hopes that I'd be feeling better today. But she told me to go ahead and cancel my appointment for Thursday if I wasn't feeling significantly better today, and I've gone ahead and done that.

***

Did I mention that Scott had jury duty this week? Well, I had to go pick up Ellie from daycare on Monday because he didn't get seated on a jury until after 5 p.m., but he was told things would be very brief on Tuesday since only two witnesses were scheduled to testify. Scott had hopes that he'd be done by lunch time and back to his office by 1 p.m.-ish.

Didn't happen that way, of course. Things just move like molasses in courtrooms, so when he called at 11:30 a.m. and told me that the jurors got kicked out so the lawyers could argue about the judge's jury instructions and closing arguments would start at 1:30 p.m., we both knew I needed to plan on picking Ellie up again Tuesday.

I had a 1 p.m. acupuncture appointment, and got home around 2 p.m. I figured I had a little time to nap and set the microwave timer (which I've used successfully as an alarm clock in the past) and settled in for a nap in my recliner. I heard it go off, and the next thing I knew the phone was ringing. I'd swear it wasn't more than a minute between the two. It was Scott on the phone, and he greeted me with, "I assume you're home already?"

Huh?

Turns out, I must have fallen back asleep after the microwave timer went off (no snooze button!) and Scott was calling me at 5 p.m. as he left the courthouse. At that point, he was about as close as I was, he decided, so there was no point in my heading out toward Kindercare too. He jumped on MAX (our light-rail train) and got to the daycare about 5:45 p.m. I did call after hanging up with Scott to let them know that he was on his way since it's much later than the 4:15 or so he usually picks Ellie up.

Boy did I feel awful for forgetting my own kid. Thank goodness Scott's jury duty didn't last any longer than it did.

While I waited for them to get home, I did the only thing I could think of to make up for my sleeping through pickup, and cleaned the kitchen and made dinner. The timing worked out well and they walked in the door just as I was draining the pasta.

It wasn't really enough to make up for it, but it seemed to help. And Ellie was perfectly happy to escape a bath for the second night in a row. :)

Sunday, April 27, 2008

In 2007, we officially used up our $1500 flexible spending account in September. That didn't count that $850 or so that was our share of my 8-day July hospital stay. (And that was a real bargain considering the bill was just shy of $20,000 before the insurance company cut it down and paid their share.)

This year, we spent the $1700 we're contributing to our 2008 FSA on April 21. There were occasional medical bills that got paid other ways, such as for my rheumatologist who only accepts cash or checks or Ellie's visit to the ER for a dislocated elbow, because it was easier not to bother submitting the receipts for reimbursement.

I guess we were feeling optimistic last November when we had to set up the 2008 FSA plan because we certainly could have benefited from having more money taken out in pre-tax dollars for medical expenses.

Even though I'm frugal with money, I really sort of wish we'd had such a light year for medical expenses that we'd ended up losing cash in the account or needing to find excuses to spend it on things like prescription sunglasses as the end of the year nears.

Wouldn't it be nice to be that healthy?

We settled on $1700 because that's the individual out-of-pocket maximum on our health insurance. But when we were making these decisions, I neglected to account for co-pays for medicine, which don't count towards our out-of-pocket maximum. (Boy do I wish it did!)

My fees for acupuncture also don't count toward that calculation since hardly any insurance plans seem to really cover alternative medicine in a thorough way. (Our insurance gets us an "affinity discount" of 25 percent from participating providers. I'm happy to get the discount, but $45 per session still adds up pretty rapidly.) And it's a shame because I think the acupuncture is the most helpful treatment I've had since getting sick, but I'm not sure how much longer I'll be able to continue.

I'm sorry it's been so long since I posted. (And for being so bad about responding to comments here and private emails as well.)

All three of us have just been hit really hard with a virus or cold bug. Scott, who is always very stoic, has managed not to miss a day's work through out this bug but I know he had days it was hard to drag himself out of bed. As for me, I have barely made it out of my pajamas since getting hit hard a week ago Friday, and just started getting back to my computer this weekend.

And poor Ellie had the dubious honor of getting sent home sick from daycare for the first time on April 18 when she complained of bad tummy pain and they discovered she was running a fever. We still don't know what the tummy pain was about (this isn't the first time lately she's complained of a tummy ache) but she'd had cold symptoms and complained of a sore throat for two or three weeks. And when we got her to the pediatrician the day she got sent home sick, she found Ellie had an ear infection so she's been on antibiotics for almost a week and is doing way better.

I've always been much more of a whiner than Scott when it comes to being sick, so it's hard to tell whether I actually get hit harder from these bugs than he does or if I just complain about it more. :) But since getting sick last summer, it really does feel like these bugs hit me much harder now than they did when I started from a relatively healthy point.

I think I can see the light at the end of the tunnel, and just the fact that I'm finally getting back to email and my blog must mean I'm on the road to recovery. But if not, I have an appointment with my internist on Monday anyway and she can decide then if it's just a cold or something that requires antibiotics.

(I have to say, I haven't had a cough like this in years. Even my two cases of pneumonia last year didn't make me cough this bad. It's been so bad that I have to resort to my albuterol inhaler at night to break the coughing cycles so I can sleep. And the sore throat keeps making me wonder if I could possibly have strep ... when Scott told me last night he had wondered the same thing about himself last week, I really scolded him for not seeing a doctor about it so I guess it's good I've got an appointment set up.)

OK, I'm officially rambling, which means it must be time to end the post. Hope all of you are staying healthy, or at least avoiding the bugs flying around!

(Note: Thought I hit the "Publish" button on Friday, April 25, but found it two days later sitting open on my computer screen and apparently it never made it to the blog. Tweaked ever so slightly to properly reflect dates.)

Thursday, April 17, 2008

Just when I thought spring had sprung, it turns out Mother Nature has a surprise for in store for us and it turns out that they say a Canadian cold front is headed our way and will bring snow to Portland this weekend.

I doubt it will be a lot, but they were talking about records when we got snow at the end of March, so I'm sure this will break some record if we really do get snow in mid April in Portland proper.

Which brings me to my Cathy Tree.

I mentioned a long time ago that my best friend, Cathy, died in June 2005 of an unexpected massive heart attack. I'm grateful that we had seen her about a month before her death and she got to meet my daughter. Our visits in Chicago were never long enough because I always had other family obligations and of course she had work. In one of those weird things where you wonder in hindsight if she somehow "knew," I got home to Portland to find a telephone message she'd left while we were flying home that said all the things you'd want to say to a friend you were never going to see again -- the she loved me and my family, that our friendship meant so much to her, how much she appreciated us making time to visit her and her parents to introduce them to Ellie, and of course how beautiful and perfect she thought Ellie was. :) It was one of those voicemails where you hit save because they just make your heart sing.

It was the last time I heard Cathy's voice. We exchanged a few emails -- she was hoping to stop off in Portland after a business trip to British Columbia that fall and I was teasing her about a potential love interest whose name she wouldn't tell me because she didn't know where, if anywhere, things were going. We called him Secret Agent Man. :)

Cathy's parents were generous, as always, and shared some of her ashes with us, which sounds kind of creepy but wasn't. That fall, the best time to plant trees here because the winter rains really help them settle in, we chose a magnolia variety called "Vulcan" which promised deep red flowers. (I'd had a dogwood that promised "pink" flowers and turned out to be pinkish white, so I figured that the Vulcan would be more vivid and I was right. The flowers are a glorious fuschia.)

We planted a bit of Cathy with the Magnolia, and so it became my Cathy Tree. I look forward to the day when it's big enough to lean on as Rose does in the Rose Is Rose comic strip.

Anyway, this long ramble is because my Cathy Tree has its first really glorious bloom this season. Its first couple springs, there were just a handful of flowers. This year, I stopped counting when I hit 27 and realized that was less than a third of the buds on the tree. About half of them are open now, and it's as beautiful as Cathy was.

But I find myself worrying about the cold front coming in because I think it might kill the rest of the buds and will almost definitely kill the flowers that are already open.

Sigh.

But there's always next spring to look forward to if the cold weather does its worst. And plenty of memories of My Cathy to keep me until then.

Saturday, April 12, 2008

In theory, I'm supposed to resume taking Plaquenil again next week, although I plan to call my rheumatologist to see what he thinks of the neurosurgeon's theory (see yesterday's post) and whether I should still resume Plaquenil on Tuesday.

I did discover one good thing about Plaquenil while I was on it that I sort of miss. It's an appetite suppressant, at least for me. In fact, one of the potential side effects is anorexia, which I found interesting.

(For those who don't know me in RL, being too skinny is not a problem I've ever had, and since my August 2006 car accident where I injured my back and had to quit going to the gym and then coming down with my mystery illness and having no energy whatsoever, I've gotten "fluffier" as they call it in some circles.)

Anyway, I certainly didn't stop eating while I was on Plaquenil, but I did stop most of my snacking. Of course, I get so little exercise because, essentially, movement makes me hurt worse in many and various ways, so I didn't suddenly drop a bunch of weight. But I was on it for five weeks and I lost 4 pounds, which was a nice side benefit.

Of course, bad abdominal cramping and moderate nausea do tend to make you less interested in food ...

In the four days or so since I quit the Plaquenil, those bad side effects went away but I was caught by surprise when I suddenly found myself hungry more often, particularly at lunch time. I had pretty much cut lunch down to a 8 ounce non-fat, sugar free container of yogurt and fruit. And I ate that more out of a feeling that I ought to eat something than out of hunger.

So when I followed my 11 a.m. neurosurgeon appointment on Friday with waiting at the hospital for the x-rays he ordered, I was startled to find myself starving as I left the hospital at 1 p.m. I hadn't been eating my lunch of yogurt until around 2ish most days, so it was a shock to be so hungry earlier than I was used to eating lately.

I solved the problem by buying half a turkey sandwich on wheat as I left the hospital, but still, it was a little weird for me.

Friday, April 11, 2008

The twists and turns of trying to figure out my mystery illness just started veering in yet another bizarre direction.

As some of you know or may remember, I was in a car accident in August 2006. I was rear-ended while stopped behind a car trying to make a left turn. The car that hit me was going at least 40 mph. I suffered back and neck injuries that still plague me.

After an MRI to see if there was damage to my spine, we discovered that I have a tethered spinal cord, a congenital birth defect usually discovered during childhood. (Although I've found one research study -- there's so few about TSC in adults -- that says that it can be caused or aggravated by trauma, such as giving birth or being in a car accident. That's their examples; I would never compare giving birth to being in a major car accident. :)

My internist sent me to consult with a neurosurgeon about it, one who I later discovered was rated by his peers as one of the top neurosurgeons in Portland. My internist assured me that he was a conservative when it came to surgery and would not recommend it unless he really thought it was necessary.

At the time, he confirmed that my spinal cord was clearly tethered and was pulled down (my memory might be foggy on this figure...) at least 1 cm, which he said was a definitive amount. Sometimes its a lesser degree and it's not clear on the MRI whether the cord is really tethered, but he said mine definitely was.

I also have a lot of degeneration at the L5-S1 joint of my spine, which is pressing on the nerve both there and the joint above it.

The question then became which problem was causing my back pain and leg symptoms. He sent me to an anesthesiologist, who first did facet joint injections of cortisone to see if I would get any relief. If the injections had been successful, they would have burned the nerve causing me problems which would have left me pain free for up to 3 years, I was told. But it's me we're talking about and I never seem to resolve medical problems the easy way. We did two rounds of facet injections without any improvement for me, and then he did two rounds of epidural injections of cortisone, which also was unsuccessful. At that point, the anesthesiologist said that my options were essentially to take large doses of long-acting narcotics (he mentioned methadone as one option!) or go have surgery. (I had, by this point, had five months of physical therapy with no relief and quite a bit of aggravation of the problem.)

I declined the major narcotics and said I would wait it out as long as I could.

Well, in the midst of dealing with all my other health problems, I need to settle things with my insurance company because the statute of limitations expires in August, just a few months away. (Did I mention the driver who hit me turned out to be uninsured and driving on a suspended license? I'm so happy the accident was in Beaverton, where police respond to every accident, and not in Portland, where they only show up if there are major injuries.)

Anyway, I've hired a lawyer to help me with those negotiations, but on these days when I've had less pain elsewhere and therefore taken much less pain medication, I've discovered that my back problem has not gone away and has simply been masked by the meds I take to cope with my other problems.

Ok, that's all background material. Sorry it's so drawn out. (Obviously I miss having a good editor to help keep me concise!)

Today (Friday), I saw the neurosurgeon again. I wanted to let him know my lawyer would be in touch (which I forgot to do!) and to see if there was anything else he recommended that would help me heal without requiring surgery.

As an aside, I mentioned that my medical history had become a lot more complicated since the last time I saw him. And then I explained it as best I could, from the hospital stay in July on, including the positive parvovirus test. I also detailed all my weird symptoms that have sent me to see just about every possible specialist I could be sent to. Or at least it seems like that.

"You know, all those symptoms could be caused by your tethered cord," he said. "And it's a very easy surgery to fix, 2 to 3 days in the hospital and most people bounce back entirely within two weeks."

I explained I'm not a bounce-back kind of patient under the best of circumstances and asked for a conservative estimate of the recovery period. He said maybe four weeks, six weeks at the absolute maximum.

He said it was impossible to know whether my tethered cord was responsible. But he says there are numerous case studies of patients who have bizarre symptoms and fluid diagnoses and have turned out to all be related to a tethered cord, and he's had a number of patients like that too. Apparently, when the spinal cord is involved, it can affect almost anything.

It really sounds too good to be true -- the idea that a "simple" operation would take care of all my health problems. We're not jumping into it. I had a bunch of x-rays taken today, and he's ordering both lumbar and cervical MRIs. We're going to talk again after he has those and discuss his recommendations. I'm hopeful that Scott will be able to attend that appointment with me so he can ask his own questions and get the information directly from the source rather than filtered through my fuzzy memory.

The tethered cord definitely wouldn't account for my elevated SED rate or positive ANA. But I've also been told by multiple doctors that those can happen without any illness/disease causing them in some people. The positive parvovirus test could be yet another red herring, like the monoclonal proteins that got me sent to a hemotologist oncologist to be tested for cancer. (Which reminds me, I'm supposed to have another blood test to check those levels again ...)

Sometimes I think I'm destined to remain a medical mystery for life, but I sure hope not.

Thursday, April 10, 2008

Just thought I'd share that both yesterday and today have been better days. I guess sleeping 10 a.m.-4 p.m. on Tuesday really helped, because my energy levels have been a bit better ever since. Or maybe I was just due for an upturn after three weeks or so of downturn.

I definitely don't understand this illness and I've given up trying.

Yesterday, I went to a book discussion group organized by my synagogue to discuss Disobedience by Naomi Alderman. Excellent book, I thought, and it was fun to get a chance to discuss it. I've always wanted to be in a book club but never managed to find one that worked for me. This was a first time thing for the synagogue; the rabbi urged everyone to read it and then the synagogue set up six discussion groups in people's homes on various days and times this week.

The one I attended was at 2 p.m., which is generally my outer limit for being able to be off pain meds and able to drive. I tried to organize a ride to get there, but unfortunately didn't start soon enough. The hostess promised me that if I could get there, she would take me home if I didn't catch a ride with someone else, so I took my sister's advice and took a taxi. It was a little more expensive than I expected -- $18 -- but one of the women at the discussion was happy to give me a ride home because she lives not far away. And next time, I'll try to start asking around earlier if I need a ride to a synagogue function. This was the first time I really sought help from the synagogue, although people from there have reached out to me since I got sick without my asking.

I'm heading to acupuncture in a couple hours and hoping this improvement lasts the weekend, which is busier than I wish it were. Ellie has a playdate on Saturday morning and then a birthday party to attend on Sunday morning. I'm happy that our babysitter, Angie, is due back Sunday afternoon, so I'll probably go take a nap while Ellie and Angie play and make art and read books and Scott heads to the woodshop.

Wednesday, April 9, 2008

So one of the side effects I heard about years ago regarding anti-malarials (and that's what Plaquenil is) is that they can cause very vivid nightmares.

Pretty much since I started Plaquenil this round, I've had what I'd describe as really vivid dreams, but I haven't really had a nightmare exactly. The dream I had this morning could easily have been a nightmare, but for some reason, I wasn't at all upset about it, either in my dream or when I woke up.

I suspect it was partially triggered by my paging through my senior year high school yearbook after I got a friend request on Facebook from a name I didn't recognize but someone who listed themselves as a 1985 graduate of Niles North High School in Skokie, IL., which was my graduating class.

Turns out there were three Dawns in my graduating class, and I'm still not sure which one this person is because she's apparently using her married name on Facebook and hasn't replied yet to my message asking for her maiden name.

Anyway, in my dream, I first found myself waiting naked in a long line at a mall store trying to return a formal dress that my mother had bought for me that was the wrong size. Nobody else was naked, just me, but it somehow didn't seem unusual or embarrassing. They accepted the dress back, but because I didn't have my mom's credit card with me, they couldn't process the return. Somehow, I left there without the dress but with the receipt that didn't show I'd returned the dress. I started to turn back to get the dress, but the store was so mobbed and I didn't feel like standing in line again, so I just left.

For some reason, I stopped by Niles North on my way home. Here, I was wearing a trench coat, but nothing underneath it. I found all my classmates standing in this long, long line that twisted throughout the school and when I asked what was going on, they told me they were practicing for the graduation ceremony. I stopped to chat briefly with a few old friends, but mostly kept repeating, "How could I have forgotten about graduation? Shouldn't they have told me about it?" A classmate (Mike Kaplan, who I haven't seen since 1985 I don't think!) told me that I was supposed to have filed a form applying for graduation (more of a college thing than a high school thing!) and that I better find Dr. Hosler, the principal, fast.

I finally found Dr. Hosler, but not until I'd run into Mr. Mitchell, who taught me flute in grade school and junior high and conducted for the school bands, and stopped to say hello to him. I haven't seen him since 1980 or '81and he definitely wasn't in my high school yearbook so I'm not sure what triggered a memory of him!

Anyway, Dr. Hosler told me that one of my teachers, Dr. Holstein (my absolute favorite college prof), had said there was a problem with either my coursework or my attendance in his class but that if I went to him and apologized, I could probably get everything straightened out.

So then I had to weave my way through my high school classmates, stopping here and there to chat with people I haven't seen since my actual high school graduation, and finally got to the auditorium where all the teachers were sitting alongside the stage and watching.

I found Dr. Holstein finally, after greeting some of my favorite high school teachers, who all wanted me to stop and chat like they hadn't seen me in years and years. (Which is true, but wouldn't have been if I was about to graduate ... )

I approached Dr. Holstein and told him that Dr. Hosler had told me I needed to talk to him and owed him an apology. "I'm not sure exactly what I've done wrong, but I'm really sorry if I neglected my classwork," I said. "I've been really sick lately -- the doctors think it might be lupus -- and my memory is really poor these days. Will you tell me what I did wrong?"

He told me I hadn't showed up to my final, and although I had an "A" going into the final, he couldn't pass me without the exam.

"But ... but ... No one told me about the final! It wasn't on the class syllabus! When was it? Can I make it up, even if it's just for half credit?"

Dr. Holstein allowed as to how we could work it out and that he would give his approval for me to participate in graduation but let me take the test afterwards.

In some ways, I'm not surprised Dr. Jay Holstein (a rabbi, but he used the Dr. title at school, if I'm recalling correctly) showed up in a dream because I recently got a newsletter from the University of Iowa saying that he had been named to a newly endowed chair in the School of Religion. (I was a double major in journalism and religion. The second degree came about mostly because I took one of Holstein's classes my first semester for general-ed requirement and liked him so much as a prof that I signed up for all his classes over the next couple years. By junior year, I realized that I only needed two religion classes outside of the ones Holstein taught to get a second major, so I went ahead and did so.) Anyway, I'd been hoping since then to find an email address for him so I could send him a note of congratulations, but haven't gotten around to it.

But overall, it was a really strange dream, combining several parts of common nightmares -- being naked in public, forgetting to show up for an exam, missing graduation because you forgot about it -- but through all of it, I was never panicky or upset. Although I did get frustrated with the store return experience, I was mostly excited to see all these faces of people I liked during high school but haven't seen since.

I wonder if that means I should actually try to make it to my 25th reunion in a few years. I've never attended one, but maybe this dream means I should try to get back for the next one.

Anyway, just wanted to share the one side effect of Plaquenil that I've actually been rather enjoying since normally I don't remember my dreams. (I had very vivid dreams during pregnancy too ... I wonder if it's a hormonal thing and Plaquenil is affecting one or some of the same hormones pregnancy does? It's probably just another weird coincidence though. :)

Tuesday, April 8, 2008

I finally called the rheumatologist today about my Plaquenil side effects. I was actually just looking for a 'script for some anti-nausea medicine, but the nurse asked for all my side effects, so I gave her the long list.

She then consulted the doc and called me back later. He wants me to stop taking the Plaquenil completely for one week, and then resume but instead of taking three 200 mg tablets a day (all at the same time), I'm to take one in the morning and one in the evening.

We'll see how that works. I'm pretty sure that the reason I was able to tolerate it better this time around than the first time, when I only lasted 10 days, is because I switched from taking it in the morning to taking it in the evening. I learned that trick when I was pregnant; if I took my prenatal vitamins in the morning, I threw them up but if I took them in the evening, I slept through the nausea they caused. (Not that I didn't have plenty of nausea all through that pregnancy ... but at least the prenatals didn't get thrown up still whole and recognizable when I took them at night.)

Anyway, we'll see. A break for a week from the extra symptoms will be nice. Last time around, they stopped within 24 hours of the first missing dose. So I should feel a little better tomorrow. Maybe.

***

I'm not entirely sure what's up. I slept relatively well last night, at least for how well I sleep these days, but I was still so exhausted today that I slept from 10 a.m. until Scott called at 4:20 p.m. to say he and Ellie were on their way home. (Other than getting woken up for a few brief telephone calls ...)

And I'm still tired enough that it feels like it won't be any problem to sleep tonight, although we'll see about that. :)

Friday, April 4, 2008

I'm not really sure what, if anything, triggered this, but I seem to be having a combination of a flare-up of sorts and an increase in symptoms I believe are caused by the Plaquenil.

So far, I'm still tolerating the Plaquenil, but I plan to call my rheumatologist next week to discuss the side effects and see if there's anything I can do to help relieve them. I'm hoping he will at least give me a prescription for Compazine, a drug I took for years while battling my chronic stomach ulcers.

The nausea started off pretty mild, but it's been getting worse over the past 10 days or so. I haven't thrown up yet, but the number of times that I feel the urge to vomit and have it come at least partly up keeps increasing. Not a pleasant sensation, although a somewhat familiar one from the years of nausea from the ulcers. I have a small number of pills left over from the last time I had a prescription (a couple years ago), and I've taken a few and they do seem to help.

I'm also having lower abdominal cramps, which I didn't realize were a possible side effect until I decided to decipher the really small print pharmaceutical info that came attached to the Plaquenil bottle. (I'd gotten an original bottle of 100 as part of my prescription for 270 of the pills.) Since we'd been having a tummy bug going through the house, I had attributed the cramps to that. But when the other tummy bug symptoms went away (trust me -- you don't want details! :), I didn't understand why the cramping didn't.

I'm also having issues with body temp sensations. Not fevers, but one minute I'm so hot I'm sweating and just a couple minutes later, I'm shivering. Last time I was on Plaquenil (for maybe 10 days total), that kicked in early on and was much more severe than I'm currently having. But it's still uncomfortable and adds to my fatigue.

I think my energy levels are about as low as they've ever been, other than the first week or so home from the hospital. I haven't left the house this week other than for acupuncture appointments (2) and a visit to my internist, where we discussed my pain relief options. But that's another post for another time. Suffice it to say that I wasn't really happy with my options, which included long-acting painkillers that would essentially make me unable to drive myself anywhere, ever.

Sigh.

Although the official "anniversary" of the start of this illness isn't until June 1, I've pretty much been sick since my first round of pneumonia that hit me in early March 2007. I didn't really start feeling human again and able to get back to socializing and Ellie's playgroups until mid May, and even then I was somewhat low energy. And then I got sick again June 1 ...

I need to wrap my mind around the idea that I may never be fully well again (although I sure hope I get better than I am right now!), and learn to accept it so I can learn how to cope with it. Other people manage it, eventually, even if they never get back to their former selves. And I need to find a way to do that too, even though I will continue to hope that my illness is temporary and I will ultimately recover.

***

I did make my internist laugh when I saw her Wednesday. Once a year, the Portland Clinic makes you fill out a form so they can update their records. Typical stuff: chronic conditions, medications, why you're there that day, etc. Under the chronic conditions, I listed my asthma, allergies, hypothyroidism and "Mystery Illness."

She got a laugh out of that one. :) I'm always at a loss about what to say when they ask why I'm there that day. "Well, I've been sick since June 2007 and was hospitalized in July 2007 for 8 days, and I've seen a ton of specialists and no one is sure yet what the heck it is I've got, and this is a follow-up on my ongoing illness."

My internist told me to just start telling them I'm there for "joint pain." :)

She also laughed with me when I told her the rheumatologist said last time I saw him that if what I have is not chronic parvo, that then he would diagnose it as a mild case of Lupus. "Mild?" she said. "You've got the worst symptoms of anyone I've ever seen with 'mild' Lupus!" We finally decided he meant that it was mild in the sense that none of my organs have shown any sign of involvement yet. But the involvement of my joints and my pain and fatigue levels are anything but mild.

****

I asked my internist whether it was possible that I have Fibromyalgia in addition to whatever the hell else it is I've got. I've asked her that before and in the past, she was pretty negative. But in addition to all this joint pain, I have tender spots pretty much all over my entire body. If you touch me, it hurts where you touch.

This time, she admitted I probably did, but that it was a "comorbidity" and that in cases like this, they focus on the main problem and hopefully that treatment also helps with the fibromyalgia. She did ask if I wanted to try Lyrica, the new drug approved for treatment of Fibromyalgia that the ads are all over TV and magazines for, but I said no. For one thing, I've already got enough pills to take right now. For another, the list of side effects looks pretty nasty and apparently are very common so that's not somewhere I want to go right now.

I do strongly identify with the TV commercial where a woman stands in front of a mirror and says something like, "If only you could see what I feel" and then, in the mirror, you start seeing these massive bruises around her neck. I can definitely identify with that. So many times, Ellie touches me and I cringe because it hurts like she's pressing on a bad bruise, but when I look under my clothing, there's no bruise there.